People’s lives should always come before money – July 28, 2016

Up until two years ago, Perth-based mother-of-two former research scientist and artist, May Ali, was the picture of health. She led an active lifestyle, working, jogging three times per week and caring for her gorgeous daughters.

However, in July 2014, she became extremely unwell.

“Two years ago (in 2014), I was perfectly fit and healthy, but when I became sick, I went downhill quickly and within six weeks, I became a quadriplegic,” May said.

“My doctors were confounded, as I went from being completely healthy, to being unable to walk, sit, or even feed myself within a matter of weeks.”

For the ensuing five months, May was confined to a hospital bed, while doctors identified multiple autoimmune diseases that had ravaged her body, including aHUS.

Due to the aggressive spread of the autoimmune diseases that she was fighting, May Ali was not only rendered a qudraplegic, but also sustained significant permanent kidney damage, to the extent that her kidneys now operate at around 50 per cent.

In September 2014, May Ali was granted access to the life-saving treatment eculizumab – the only clinically proven therapy available for aHUS – which she receives on a fortnightly basis, from which she has seen a marked improvement in her health, and overall quality of life.

“Accessing eculizumab has allowed me to keep aHUS at bay, and by doing so, it helps me to manage the other autoimmune conditions I am living with,” said May.

“As a result, today I am able to walk normally for the first time in two years.”

Despite her substantial improvement, May is still very wary of what her future may hold.

“I am very concerned that come the end of the year, I could lose access to eculizumab, and end up back where I started.

“Given my kidneys have been so damaged and only operate at 50 per cent these days, if I lose access to eculizumab, further kidney damage could very well mean that I will have to go back onto dialysis, which would take up most of my time, rendering me unable to work and function fully in society, like I want to,” May Ali said.

May is continuing to plea with the Federal government to consider her situation, and requests that before they make any calls on her ongoing, future access to eculizumab, that they talk to her treating doctors.

“I strongly believe that the best people to make the decision as to when I should go off eculizumab are the specialists who have treated me from the start.

“I have such a unique series of illnesses, and I know that they [treating specialists] are the only ones who are qualified to make such a call,” said May.

“I am gravely concerned that they will be taken out of the equation with regard to making this decision, and that the PBAC will get to make this call without even meeting me, or discussing my conditions with me.